The real reason that I am writing tonight is to share with you that Meaghan has another and hopefully final (at least for a while) broncoscopy scheduled for Monday. Yes, this coming Monday 2/4/13. Some of you may know that that day is significant for our family, it's Jonathan's 4th birthday. That poor baby seems to get the short straw when it comes to birthdays every year. I'm going to have to make this up to him for years to come. Meaghan is scheduled for an outpatient procedure and God willing she'll be comfortably home by late afternoon that day.
This broncoscopy is primarily to test for the MAI infection we found one year ago (2/5/12). If what we believe to be true is confirmed with this test, Meaghan will be able to discontinue the three oral antibiotics she has been taking all year. We will also learn if the last round of inhaled antibiotics to eliminate pseudomonas was successful. We will know soonest about the pseudomonas, about 48 hrs post bronc. The MAI can take weeks to grow in a culture so we'll just have to wait. Once Meaghan is off of the antibiotics we are looking forward to seeing her GI tract reset and find a healthy balance again. We have spent so many hours working on establishing a calorically dense meal schedule that allows Meaghan to continue to gain weight to spite her GI upset. Meaghan's immediate future still has a lot of unknowns but there is reason for us to feel hopeful that this year is one we can file in the "Let's not go there again" category.
Thank you all from the bottom of our hearts for your support through the ups and downs. Cystic fibrosis is still very much a part of our daily lives, like so many other people we love. Precious lives are lost every day to this terrible disease and our fight is not over.
Love, love, love the rollercoaster. I had never seen anything like it. I can see why the kids played on it for hours. Sure wish I had something like that when I was a kid.
ReplyDeleteI pray all goes well with the broncoscopy and that a loss of needed antibiotics is in your future as well as a settling GI tract. :)
Will you celebrate Jonathan's birthday on Sunday? With Meaghan's procedure being outpatient, hopefully you'll still be able to celebrate a little in the evening. Oh....sorry I won't be nearby to help assemble the rest of his blocks ;).
Much love, Janet
Yay! That coaster looks so fun and that is a long way to go! They will be playing with that all summer too! Awesome!
ReplyDeleteWe'll be praying for the procedure on Monday. We pray that it will all be put behind and filed with the end of 2012. A bright 2013 is in the future!
I'm with Janet, hopefully you can celebrate this weekend and have a great time. Jonathan won't think anything of it, as long as he gets his cake and maybe some balloons at some point! (Okay, maybe that is Levi but surely Jonathan will be about the same!) And, for his birthday dinner, you should steer him toward carry-out pizza picked up by his wonderful father! (Just a suggestion!!)
Janet, too bad you can't be there to help! I'm sure those rectangles are going to drive Michelle nuts! But, the great thing is that kids LOVE them! (On a side note, I know that Michelle would LOVE for you to visit too!)
Talk to you soon!!!
Love,
Tracey